Atticus Hanchey was born weighing 3 lbs. 12 ounces.
His mom, Ginger, knew something was wrong when she woke up with pains in the middle of the night at 30 weeks pregnant.
Atticus had a rare complication called chylothorax that caused a lymph node to leak fluid, which threatened to drown his lungs and needed to be pumped out.
But this fluid contained precious proteins and cells he needed in order to live.
Around the same time, they discovered he had another unrelated issue – a persistent feeding intolerance. He couldn’t process milk or formula, surviving the first 6 weeks on IV fluids alone.
Ginger says she experienced Atticus’ birth and first year as grief. “We were living in a nightmare—a hell,” she says.
I wanted to interview Ginger after I heard her and her husband, Dan, talk about their experience at my church. I'm on a mission to help kids feel loved and valued and show how much their lives matter.
Atticus’ doctors put him on a drug that treated his chylothorax, but none of the tests could explain his feeding issues.
On top of that, he needed breastmilk in case his body started accepting food. So she was pumping around the clock, and for a baby that wasn’t even there. The strain of that was one of the most difficult parts because it was so exhausting, physically and emotionally.
Ginger woke up one night and realized God wasn’t there. “He wasn’t real in the way I had always imagined him,” she says.
“It was the worst moment of my life.”
Atticus was eventually able to accept small amounts of food, and after a nearly three-month stay in the hospital, he came home. When he made it past his first birthday, Ginger felt like he would be OK.
It’s taken some time, but she’s gradually been able to borrow back some of her old ways of knowing God and praying.
One of the things that impacted her the most was her time with other families in the NICU.
A lot of the babies there weren’t going to be OK.
But what surprised her was how their families were able to find joy in the midst of incredible suffering. And it was a deep, abiding joy.
It changed how she viewed God too. Ginger heard over and over how much joy children with disabilities bring to those around them.
So what advice does she have for parents facing a similar tragedy?
“It seems like there is nothing that could possibly make life ok again when you’re faced with a child’s death or severe disability,” she says.
It’s OK to go to that dark place and admit how you’re feeling.
“In a way, I feel like it was a sign of love for my child to stand up to God on his behalf. Surely God understands this.”
While Atticus continues to suffer respiratory infections, he's has never been back in the hospital. His GI and chylothorax issues are completely gone.
Atticus is a wonder to his family. He loves life and everyone he meets.
Ginger says she’s been able to bond with him as well as she did with her first son, something she worried she wouldn’t be able to do.
These days he’s just your typical two year old – adventurous, happy, and most surprisingly, fearless.
Have you had a similar experience as a parent? I'd love to hear your story. Please leave a comment in the section below.